The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications (...) of Big Data lags behind. In order to bridge such a gap, this article systematically and comprehensively analyses academic literature concerning the ethical implications of Big Data, providing a watershed for future ethical investigations and regulations. Particular attention is paid to biomedical Big Data due to the inherent sensitivity of medical information. By means of a meta-analysis of the literature, a thematic narrative is provided to guide ethicists, data scientists, regulators and other stakeholders through what is already known or hypothesised about the ethical risks of this emerging and innovative phenomenon. Five key areas of concern are identified: informed consent, privacy, ownership, epistemology and objectivity, and ‘Big Data Divides’ created between those who have or lack the necessary resources to analyse increasingly large datasets. Critical gaps in the treatment of these themes are identified with suggestions for future research. Six additional areas of concern are then suggested which, although related have not yet attracted extensive debate in the existing literature. It is argued that they will require much closer scrutiny in the immediate future: the dangers of ignoring group-level ethical harms; the importance of epistemology in assessing the ethics of Big Data; the changing nature of fiduciary relationships that become increasingly data saturated; the need to distinguish between ‘academic’ and ‘commercial’ Big Data practices in terms of potential harm to data subjects; future problems with ownership of intellectual property generated from analysis of aggregated datasets; and the difficulty of providing meaningful access rights to individual data subjects that lack necessary resources. Considered together, these eleven themes provide a thorough critical framework to guide ethical assessment and governance of emerging Big Data practices. (shrink)

The current prevailing view is that participation in biomedical research is above and beyond the call of duty. While some commentators have offered reasons against this, we propose a novel public goods argument for an obligation to participate in biomedical research. Biomedical knowledge is a public good, available to any individual even if that individual does not contribute to it. Participation in research is a critical way to support an important public good. Consequently, all have a duty to participate. The (...) current social norm is that individuals participate only if they have a good reason to do so. The public goods argument implies that individuals should participate unless they have a good reason not to. Such a shift would be of great aid to the progress of biomedical research, eventually making society significantly healthier and longer lived. (shrink)

Part of understanding the meaning and power of algorithms means asking what new demands they might make of ethical frameworks, and how they might be held accountable to ethical standards. I develop a definition of networked information algorithms as assemblages of institutionally situated code, practices, and norms with the power to create, sustain, and signify relationships among people and data through minimally observable, semiautonomous action. Starting from Merrill’s prompt to see ethics as the study of “what we ought to do,” (...) I examine ethical dimensions of contemporary NIAs. Specifically, in an effort to sketch an empirically grounded, pragmatic ethics of algorithms, I trace an algorithmic assemblage’s power to convene constituents, suggest actions based on perceived similarity and probability, and govern the timing and timeframes of ethical action. (shrink)

The paper outlines a new interpretation of informational privacy and of its moral value. The main theses defended are: (a) informational privacy is a function of the ontological friction in the infosphere, that is, of the forces that oppose the information flow within the space of information; (b) digital ICTs (information and communication technologies) affect the ontological friction by changing the nature of the infosphere (re-ontologization); (c) digital ICTs can therefore both decrease and protect informational privacy but, most importantly, they (...) can also alter its nature and hence our understanding and appreciation of it; (d) a change in our ontological perspective, brought about by digital ICTs, suggests considering each person as being constituted by his or her information and hence regarding a breach of one’s informational privacy as a form of aggression towards one’s personal identity. (shrink)

In this paper, I present an informational approach to the nature of personal identity. In “Plato and the problem of the chariot”, I use Plato’s famous metaphor of the chariot to introduce a specific problem regarding the nature of the self as an informational multiagent system: what keeps the self together as a whole and coherent unity? In “Egology and its two branches” and “Egology as synchronic individualisation”, I outline two branches of the theory of the self: one concerning the (...) individualisation of the self as an entity, the other concerning the identification of such entity. I argue that both presuppose an informational approach, defend the view that the individualisation of the self is logically prior to its identification , and suggest that such individualisation can be provided in informational terms. Hence, in “A reconciling hypothesis: the three membranes model”, I offer an informational individualisation of the self, based on a tripartite model, which can help to solve the problem of the chariot. Once this model of the self is outlined, in “ICTs as technologies of the self” I use it to show how ICTs may be interpreted as technologies of the self. In “The logic of realisation”, I introduce the concept of “realization” (Aristotle’s anagnorisis ) and support the rather Spinozian view according to which, from the perspective of informational structural realism, selves are the final stage in the development of informational structures. The final “Conclusion: from the egology to the ecology of the self” briefly concludes the article with a reference to the purposeful shaping of the self, in a shift from egology to ecology. (shrink)

Personal Health Monitoring (PHM) uses electronic devices which monitor and record health-related data outside a hospital, usually within the home. This paper examines the ethical issues raised by PHM. Eight themes describing the ethical implications of PHM are identified through a review of 68 academic articles concerning PHM. The identified themes include privacy, autonomy, obtrusiveness and visibility, stigma and identity, medicalisation, social isolation, delivery of care, and safety and technological need. The issues around each of these are discussed. The system (...) / lifeworld perspective of Habermas is applied to develop an understanding of the role of PHMs as mediators of communication between the institutional and the domestic environment. Furthermore, links are established between the ethical issues to demonstrate that the ethics of PHM involves a complex network of ethical interactions. The paper extends the discussion of the critical effect PHMs have on the patient’s identity and concludes that a holistic understanding of the ethical issues surrounding PHMs will help both researchers and practitioners in developing effective PHM implementations. (shrink)

Mature information societies are characterised by mass production of data that provide insight into human behaviour. Analytics has arisen as a practice to make sense of the data trails generated through interactions with networked devices, platforms and organisations. Persistent knowledge describing the behaviours and characteristics of people can be constructed over time, linking individuals into groups or classes of interest to the platform. Analytics allows for a new type of algorithmically assembled group to be formed that does not necessarily align (...) with classes or attributes already protected by privacy and anti-discrimination law or addressed in fairness- and discrimination-aware analytics. Individuals are linked according to offline identifiers and shared behavioural identity tokens, allowing for predictions and decisions to be taken at a group rather than individual level. This article examines the ethical significance of such ad hoc groups in analytics and argues that the privacy interests of algorithmically assembled groups in inviolate personality must be recognised alongside individual privacy rights. Algorithmically grouped individuals have a collective interest in the creation of information about the group, and actions taken on its behalf. Group privacy is proposed as a third interest to balance alongside individual privacy and social, commercial and epistemic benefits when assessing the ethical acceptability of analytics platforms. (shrink)

Scholars and policy makers often refer to the “information society”. And yet, it is more accurate to speak of societies, each different, some of which may qualify as information ones at different levels of maturity. Through exploration of the concepts of expectations, education and innovation, this paper explores what it means for an information society to be more or less mature than others, and the impact of this on the ongoing digital revolution.

(2013). Informed Consent, Big Data, and the Oxymoron of Research That Is Not Research. The American Journal of Bioethics: Vol. 13, No. 4, pp. 40-42. doi: 10.1080/15265161.2013.768864.

This paper analyzes ethical aspects of the new paradigm of Ambient Intelligence, which is a combination of Ubiquitous Computing and Intelligent User Interfaces (IUI’s). After an introduction to the approach, two key ethical dimensions will be analyzed: freedom and privacy. It is argued that Ambient Intelligence, though often designed to enhance freedom and control, has the potential to limit freedom and autonomy as well. Ambient Intelligence also harbors great privacy risks, and these are explored as well.

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely to become involved in the caring process and (...) informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. (shrink)

Contemporary health care relies on electronic devices. These technologies are not ethically neutral but change the practice of care. In light of Sennett's work and that of other thinkers one worry is that "e-care"aEuro"care by means of new information and communication technologies-does not promote skilful and careful engagement with patients and hence is neither conducive to the quality of care nor to the virtues of the care worker. Attending to the kinds of knowledge involved in care work and their moral (...) significance, this paper explores what "craftsmanship" means in the context of medicine and health care and discusses whether today the care giver's craftsmanship is eroded. It is argued that this is a real danger, especially under modern conditions and in the case of telecare, but that whether it happens, and to what extent it happens, depends on whether in a specific practice and given a specific technology e-carers can develop the know-how and skill to engage more intensely with those under their care and to cooperate with their co-workers. (shrink)

This paper poses the question of whether people have a duty to participate in digital epidemiology. While an implied duty to participate has been argued for in relation to biomedical research in general, digital epidemiology involves processing of non-medical, granular and proprietary data types that pose different risks to participants. We first describe traditional justifications for epidemiology that imply a duty to participate for the general public, which take account of the immediacy and plausibility of threats, and the identifiability of (...) data. We then consider how these justifications translate to digital epidemiology, understood as an evolution of traditional epidemiology that includes personal and proprietary digital data alongside formal medical datasets. We consider the risks imposed by re-purposing such data for digital epidemiology and propose eight justificatory conditions that should be met in justifying a duty to participate for specific digital epidemiological studies. The conditions are then applied to three hypothetical cases involving usage of social media data for epidemiological purposes. We conclude with a list of questions to be considered in public negotiations of digital epidemiology, including the application of a duty to participate to third-party data controllers, and the important distinction between moral and legal obligations to participate in research. (shrink)

Web mining refers to the whole of data miningand related techniques that are used toautomatically discover and extract informationfrom web documents and services. When used in abusiness context and applied to some type ofpersonal data, it helps companies to builddetailed customer profiles, and gain marketingintelligence. Web mining does, however, pose athreat to some important ethical values likeprivacy and individuality. Web mining makes itdifficult for an individual to autonomouslycontrol the unveiling and dissemination of dataabout his/her private life. To study thesethreats, we (...) distinguish between `content andstructure mining' and `usage mining.' Webcontent and structure mining is a cause forconcern when data published on the web in acertain context is mined and combined withother data for use in a totally differentcontext. Web usage mining raises privacyconcerns when web users are traced, and theiractions are analysed without their knowledge.Furthermore, both types of web mining are oftenused to create customer files with a strongtendency of judging and treating people on thebasis of group characteristics instead of ontheir own individual characteristics and merits(referred to as de-individualisation). Althoughthere are a variety of solutions toprivacy-problems, none of these solutionsoffers sufficient protection. Only a combinedsolution package consisting of solutions at anindividual as well as a collective level cancontribute to release some of the tensionbetween the advantages and the disadvantages ofweb mining. The values of privacy andindividuality should be respected and protectedto make sure that people are judged and treatedfairly. People should be aware of theseriousness of the dangers and continuouslydiscuss these ethical issues. This should be ajoint responsibility shared by web miners (bothadopters and developers), web users, andgovernments. (shrink)

Ambient Intelligence provides the potential for vast and varied applications, bringing with it both promise and peril. The development of Ambient Intelligence applications poses a number of ethical and legal concerns. Mobile devices are increasingly evolving into tools to orientate in and interact with the environment, thus introducing a user-centric approach to Ambient Intelligence. The MINAmI (Micro-Nano integrated platform for transverse Ambient Intelligence applications) FP6 research project aims at creating core technologies for mobile device based Ambient Intelligence services. In this (...) paper we assess five scenarios that demonstrate forthcoming MINAmI-based applications focusing on healthcare, assistive technology, homecare, and everyday life in general. A legal and ethical analysis of the scenarios is conducted, which reveals various conflicting interests. The paper concludes with some thoughts on drafting ethical guidelines for Ambient Intelligence applications. (shrink)

The use of tools and artefacts is a distinctive and problematic phenomenon in the history of humanity, and as such it has been a topic of discussion since the beginning of Western culture, from the myths of the Ancient Greek through Humanism and Romanticism to Heidegger. Several questionable aspects have been brought to the fore: the relation between technology and arts, the effects of the use of technology both on the world and on the user and the nature of the (...) trust that users place in technology . This last topic is the subject of this special issue, which has the twofold goal of fostering a cross-disciplinary debate and, in doing so, of overcoming, at least in part, the fragmentation of the literature on this topic.The problematic nature of trust in technology becomes evident with the dissemination of information and communication technologies and the subsequent information revolution, with which artefacts cease to be used mainly to perform physical and fatigui .. (shrink)

The reality of an ageing Europe has called attention to the importance of e-inclusion for a growing population of senior citizens. For some, this may mean closing the digital divide by providing access and support to technologies that increase citizen participation; for others, e-inclusion means access to assistive technologies to facilitate and extend their living independently. These initiatives address a social need and provide economic opportunities for European industry. While undoubtedly desirable, and supported by European Union initiatives, several cultural assumptions (...) or issues related to the initiatives could benefit from fuller examination, as could their practical and ethical implications. This paper begins to consider these theoretical and practical concerns. The first part of the paper examines cultural issues and assumptions relevant to adopting e-technologies, and the ethical principles applied to them. These include (1) the persistence of ageism, even in e-inclusion; (2) different approaches to, and implications of independent living; and (3) the values associated with different ethical principles, given their implications for accountability to older users. The paper then discusses practical issues and ethical concerns that have been raised by the use of smart home and monitoring technologies with older persons. Understanding these assumptions and their implications will allow for more informed choices in promoting ethical application of e-solutions for older persons. (shrink)

‘DU bist Radio’ (DBR) is an award winning [DBR has been awarded with the “Catholic Media Award of the German Bishops Conference, Prädikat WERTvoll” (2011), the Suisse “Media Prize Aargau/Solothurn” (2010), the German “Alternative Media Award” (2009) and was nominated for the “Prix Europa” (2009)] monthly radio format that goes on air on three Swiss radio stations. The purpose of this program which was first broadcast in 2009 is the development of a new media format which—without applying any journalistic (or (...) other) filter and influence—conveys authenticity of expression amongst society’s most vulnerable fellow citizens such as patients, clients and the socially deprived. So-called marginal groups are encouraged to speak for themselves, as a possible paradigm case for encouraging the inclusion of patients’ and relatives’ “unfiltered” voices in general and in clinical ethics as well. Before handing over the microphone to the groups in focus, a team of journalists, educated in medical ethics, over a period of 4 days, teaches them on-site radio skills and craft. Once this task is completed and the actual production of the broadcast begins, the media crew does not exert any influence whatsoever on the content of the 1-h program. Thus, the final product is solely created and accounted for by the media-inexperienced participants, leading to unforeseen and often surprising results. It is discussed that the DBR approach of fostering authenticity of expression can serve as an enhancement to today’s respect and autonomy oriented field of medical ethics. (shrink)